What are the unmet needs of Malaysian stroke survivors living in the community? A collaboration between the National University of Malaysia (UKM) and the University of Nottingham aimed to find out.
Prof Dr Noor Azah Aziz1 & Dr Nor Shahrina Mohd Zawawi2
1 Department of Family Medicine, Faculty of Medicine, National University of Malaysia (UKM), Jalan Yaacob Latiff, 56000 Kuala Lumpur, Malaysia
2 Department of Medical Rehabilitation Services, Hospital Tuanku Canselor Muhriz, National University of Malaysia (UKM), Jalan Yaacob Latiff, 56000 Kuala Lumpur, Malaysia
Professor Dr Noor Azah Aziz, Professor Dr Kartini Ahmad and Dr Nor Shahrina Mohd Zawawi at UKM teamed up with Professor Marion Walker and Dr Rebecca Fisher at Nottingham University to investigate the long-term unmet needs of stroke survivors living in the community in Malaysia.
“Long-term stroke care is something relatively new in the field of stroke care in most countries, including our country.” said Prof Professor Noor Azah Aziz, Head of the Advanced Stroke Clinic Unit at Tuanku Muhriz Chancellor Hospital “Our health system already has the expertise in managing acute stroke care, but there is still much to be learned about advanced stroke care.”
The group carried out a nationwide cross-sectional survey with the main aim of assessing the adequacy and effectiveness of current stroke care services. The survey covered a broad range of themes centred around recovery and community-living after stroke, including receiving information about stroke, changes in relationships, participation and support in stroke support groups and four scopes of assistance (health care, daily activities, work and recreation, and finances).
In total 287 stroke survivors and 263 caregivers took part. The most glaring unmet need was related to finances, either to meet daily needs or to cover medical expenses in which 76.8% felt that financial needs could not meet their medical care and rehabilitation expenses.
“We observed that the largest concern among stroke survivors and caregivers was finances” said Professor Noor Azah Aziz “In fact, almost 50% of respondents voiced the need for financial support in order to continue with their daily life.”
Researchers of Nottingham University UK and The National University of Malaysia (UKM) during the workshop in 2019. From left to right: Dr Yazmin Ahmad Rusli (UKM), Dr Rebecca Fisher (Nottingham University UK), Professor Dr Marion Walker (Nottingham Univers
Inability to access help in returning to return to work was also found to be inadequate for 30.4% of the stroke survivors in this study. This was a particularly prominent concern in stroke survivors below 60. These younger stroke survivors were also more likely to have unmet needs for managing incontinence and dysphagia, caring for other family members and meeting financial needs.
“We saw an unmet need for independent travel, particularly in younger persons” said Dr Nor Shahrina Mohd Zawawi, Speech-Language Therapist and Coordinator of the Stroke Service Improvement Committee at HCTM Medical Rehabilitation Services Department “It was clear that younger survivors were struggling with a wide range of concerns regarding long-term stroke care”
Whilst 21.5% felt that there were problems with having fulfilling relationships, most respondents felt that their relationships had been made closer after the stroke. Similarly, most reported receiving information regarding stroke, but many emphasised the need for more information, particularly regarding managing personal affairs of stroke survivors (65.8%) transporting stroke survivors (59%), and planning for vacation after a stroke (50.5%).
“Our research identified the need for more information to be given after stroke” said Dr Nor Shahrina Mohd Zawawi “such information would improve quality of life for both stroke survivors and caregivers and enhance opportunities for stroke survivors to have independence, all of which would reduce the social and economic impact of stroke in the country.” The researchers also emphasize the need for support from the government in providing financial aid, social support and more post-stroke information to stroke survivors and their families.
The researchers thank the University of Nottingham UK for the fund “Stroke Rehabilitation Life Cycle PhD Studentship: Nottingham UK and Malaysia Collaboration”.
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